In addition to the direct impact of childhood cancer, the disease also has a major effect on the quality of life of a child and their family. Childhood oncologists and other healthcare professionals in the Princess Máxima Center use questionnaires to systematically keep track of various aspects of quality of life after diagnosis. Children and parents answer questions about how they are doing physically, emotionally and socially, and how they are doing at school. For example, they are asked about pain, fatigue and nausea, but also about friendships and concentration. The questionnaires, called Kwaliteit van Leven in Kaart (KLIK; ‘quality of life mapped out’), help in the care of the individual child and also make research possible.
Researchers from the Grootenhuis group in the Máxima Center analyzed data on quality of life during and after treatment of more than 2,000 children who were treated for cancer between 2015 and 2022. About two-thirds of the children were diagnosed after June 2018 - the moment when all care and research for children with cancer was brought together in the Máxima Center. The study was published in the journal BMC Cancer.
Centralization
The researchers saw that overall, the quality of life of individual children with cancer slowly improved in all four areas – physically, emotionally, socially and at school – in the years after their diagnosis. But the study also pointed out important differences. Children diagnosed with cancer after centralization in the Máxima Center reported a better quality of life than children diagnosed before centralization. That difference was most clear on the physical and social levels.
Children with a brain tumor had a worse quality of life in all areas than children with other forms of cancer, the analysis showed. They did experience the greatest improvement in quality of life after the centralization of care and research in the Máxima Center. The researchers believe that this is due to our focus on quality of life, and through specialized care specifically aimed at quality of life in children with cancer, and in particular children with a brain tumor. For example by a dedicated pain team and multidisciplinary outpatient clinics. All children are supervised by child life specialists, and their quality of life is carefully monitored.
Fatigue
A similar study in the journal Acta Oncologica from the same research group, specifically focused on fatigue, analyzed the questionnaire responses of 1,600 children with cancer over the period after cancer treatment. This study showed that children with a brain tumor had symptoms of fatigue more often than children with blood cancer or a solid tumor elsewhere in the body. In this study too, the researchers saw less fatigue in children whose disease was diagnosed after centralization in the Máxima Center, especially in children with a brain tumor. The level of parental stress was related to the child's fatigue in all groups of children.
The research results make it possible to integrate the average scores of children with cancer into the dashboard of the so-called KLIK PROM portal, the system for Patient Reported Outcome Measures (PROMs) with which healthcare professionals in the Princess Máxima Center monitor quality of life.
Dr. Raphaële van Litsenburg, pediatrician and researcher in the Grootenhuis group, led both studies. She says: 'The diagnosis of childhood cancer has an enormous impact on the child and family. During and after treatment, children and parents must adapt to a 'new normal'. With our research we make measurable what this new normal actually means for them. We will integrate the results of our research into daily care. In this way we can provide children, parents and healthcare professionals with a concrete measure of quality of life in children with cancer. We know that it can be demotivating for children after cancer treatment to compare themselves with healthy peers. The new outcomes give them realistic and clear insight into the quality of life that is achievable for them. They also provide healthcare professionals with a framework to identify children who need extra help at an early stage.'
Prof. Dr. Martha Grootenhuis, research group leader and head of the PROM Facility, the expertise center for questionnaires for healthcare and research, says: 'The mission of the Princess Máxima Center is twofold: to cure all children with cancer, with optimal quality of life. It is very valuable to be able to show with our research that this focus has already led to improved quality of life for children with cancer. These studies show which children need even more attention in terms of quality of life. This 'baseline measurement' also gives us the basis to continue to work on targeted improvements in the quality of life for children with cancer.'
Jakolien van Eijk, general manager of KiKa, says: 'KiKa fully supports the mission of the Máxima Center and I am very proud that thanks to our donors we can make an important contribution to research into quality of life. First of all, of course, because children should live as 'carefree' as possible. Second of all, because we notice when we provide information at primary schools that those around a sick child are usually completely unaware that cancer-free does not always mean symptom-free. That is often very intense for the children involved and their families, because you have to continuously explain that there are still so many concerns even after recovery.'
Both the research on quality of life in general and the study on fatigue were funded by Kika and the Swedish research funder Vetenskapsrådet.